AutomedicationFrancoV1, Main, Exploration, bibRecord, 000422

Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.

Identifieur interne : 000422 ( Main/Exploration ); précédent : 000421; suivant : 000423

Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.

Auteurs : Christa Flück [Suisse] ; Anna Nordenström [Suède] ; S Faisal Ahmed [Royaume-Uni] ; Salma R. Ali [Royaume-Uni] ; Marta Berra [Italie] ; Joanne Hall [Royaume-Uni] ; Birgit Köhler ; Vickie Pasterski [Royaume-Uni] ; Ralitsa Robeva [Bulgarie] ; Katinka Schweizer [Allemagne] ; Alexander Springer [Autriche] ; Puck Westerveld [Pays-Bas] ; Olaf Hiort [Allemagne] ; Martine Cools [Belgique]

Source :

European journal of endocrinology [ 1479-683X ] ; 2019.

RBID : pubmed:31539875

Descripteurs français

KwdFr :
- Collecte de données (normes), Développement sexuel (physiologie), Enfant (MeSH), Femelle (MeSH), Humains (MeSH), Mâle (MeSH), Normes de référence (MeSH), Plan de recherche (MeSH), Qualité de vie (MeSH), Résultat thérapeutique (MeSH), Troubles du développement sexuel (chirurgie), Troubles du développement sexuel (diagnostic), Troubles du développement sexuel (génétique).
MESH :
- chirurgie : Troubles du développement sexuel.
- diagnostic : Troubles du développement sexuel.
- génétique : Troubles du développement sexuel.
- normes : Collecte de données.
- physiologie : Développement sexuel.
- Enfant, Femelle, Humains, Mâle, Normes de référence, Plan de recherche, Qualité de vie, Résultat thérapeutique.

English descriptors

KwdEn :
- Child (MeSH), Data Collection (standards), Disorders of Sex Development (diagnosis), Disorders of Sex Development (genetics), Disorders of Sex Development (surgery), Female (MeSH), Humans (MeSH), Male (MeSH), Quality of Life (MeSH), Reference Standards (MeSH), Research Design (MeSH), Sexual Development (physiology), Treatment Outcome (MeSH).
MESH :
- diagnosis : Disorders of Sex Development.
- genetics : Disorders of Sex Development.
- physiology : Sexual Development.
- standards : Data Collection.
- surgery : Disorders of Sex Development.
- Child, Female, Humans, Male, Quality of Life, Reference Standards, Research Design, Treatment Outcome.

Abstract

The treatment and care of individuals who have a difference of sex development (DSD) have been revised over the past two decades and new guidelines have been published. In order to study the impact of treatments and new forms of management in these rare and heterogeneous conditions, standardised assessment procedures across centres are needed. Diagnostic work-up and detailed genital phenotyping are crucial at first assessment. DSDs may affect general health, have associated features or lead to comorbidities which may only be observed through lifelong follow-up. The impact of medical treatments and surgical (non-) interventions warrants special attention in the context of critical review of current and future care. It is equally important to explore gender development early and refer to specialised services if needed. DSDs and the medical, psychological, cultural and familial ways of dealing with it may affect self-perception, self-esteem, and psychosexual function. Therefore, psychosocial support has become one of the cornerstones in the multidisciplinary management of DSD, but its impact remains to be assessed. Careful clinical evaluation and pooled data reporting in a global DSD registry will allow linking genetic, metabolomic, phenotypic and psychological data. For this purpose, our group of clinical experts and patient and parent representatives designed a template for structured longitudinal follow-up. In this paper, we explain the rationale behind the selection of the dataset. This tool provides guidance to professionals caring for individuals with a DSD and their families. At the same time, it collects the data needed for answering unsolved questions of patients, clinicians, and researchers. Ultimately, outcomes for defined subgroups of rare DSD conditions should be studied through large collaborative endeavours using a common protocol.

DOI: 10.1530/EJE-19-0363
PubMed: 31539875

Affiliations:

Allemagne, Autriche, Belgique, Bulgarie, Italie, Pays-Bas, Royaume-Uni, Suisse, Suède
Angleterre, Angleterre de l'Est, Canton de Berne, Hambourg, Sofia-ville (oblast), Svealand, Vienne (Autriche), Écosse
Berne, Cambridge, Glasgow, Hambourg, Sofia, Stockholm, Vienne (Autriche)
Université de Cambridge, Université de Glasgow

Links toward previous steps (curation, corpus...)

to stream Main, to step Corpus: 000351
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Le document en format XML

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<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Child (MeSH)</term>
<term>Data Collection (standards)</term>
<term>Disorders of Sex Development (diagnosis)</term>
<term>Disorders of Sex Development (genetics)</term>
<term>Disorders of Sex Development (surgery)</term>
<term>Female (MeSH)</term>
<term>Humans (MeSH)</term>
<term>Male (MeSH)</term>
<term>Quality of Life (MeSH)</term>
<term>Reference Standards (MeSH)</term>
<term>Research Design (MeSH)</term>
<term>Sexual Development (physiology)</term>
<term>Treatment Outcome (MeSH)</term>
</keywords>
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<term>Développement sexuel (physiologie)</term>
<term>Enfant (MeSH)</term>
<term>Femelle (MeSH)</term>
<term>Humains (MeSH)</term>
<term>Mâle (MeSH)</term>
<term>Normes de référence (MeSH)</term>
<term>Plan de recherche (MeSH)</term>
<term>Qualité de vie (MeSH)</term>
<term>Résultat thérapeutique (MeSH)</term>
<term>Troubles du développement sexuel (chirurgie)</term>
<term>Troubles du développement sexuel (diagnostic)</term>
<term>Troubles du développement sexuel (génétique)</term>
</keywords>
<keywords scheme="MESH" qualifier="chirurgie" xml:lang="fr"><term>Troubles du développement sexuel</term>
</keywords>
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</keywords>
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</keywords>
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</keywords>
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</keywords>
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</keywords>
<keywords scheme="MESH" qualifier="standards" xml:lang="en"><term>Data Collection</term>
</keywords>
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</keywords>
<keywords scheme="MESH" xml:lang="en"><term>Child</term>
<term>Female</term>
<term>Humans</term>
<term>Male</term>
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<front><div type="abstract" xml:lang="en">The treatment and care of individuals who have a difference of sex development (DSD) have been revised over the past two decades and new guidelines have been published. In order to study the impact of treatments and new forms of management in these rare and heterogeneous conditions, standardised assessment procedures across centres are needed. Diagnostic work-up and detailed genital phenotyping are crucial at first assessment. DSDs may affect general health, have associated features or lead to comorbidities which may only be observed through lifelong follow-up. The impact of medical treatments and surgical (non-) interventions warrants special attention in the context of critical review of current and future care. It is equally important to explore gender development early and refer to specialised services if needed. DSDs and the medical, psychological, cultural and familial ways of dealing with it may affect self-perception, self-esteem, and psychosexual function. Therefore, psychosocial support has become one of the cornerstones in the multidisciplinary management of DSD, but its impact remains to be assessed. Careful clinical evaluation and pooled data reporting in a global DSD registry will allow linking genetic, metabolomic, phenotypic and psychological data. For this purpose, our group of clinical experts and patient and parent representatives designed a template for structured longitudinal follow-up. In this paper, we explain the rationale behind the selection of the dataset. This tool provides guidance to professionals caring for individuals with a DSD and their families. At the same time, it collects the data needed for answering unsolved questions of patients, clinicians, and researchers. Ultimately, outcomes for defined subgroups of rare DSD conditions should be studied through large collaborative endeavours using a common protocol.</div>
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<DateCompleted><Year>2019</Year>
<Month>11</Month>
<Day>29</Day>
</DateCompleted>
<DateRevised><Year>2020</Year>
<Month>01</Month>
<Day>29</Day>
</DateRevised>
<Article PubModel="Print"><Journal><ISSN IssnType="Electronic">1479-683X</ISSN>
<JournalIssue CitedMedium="Internet"><Volume>181</Volume>
<Issue>5</Issue>
<PubDate><Year>2019</Year>
<Month>Nov</Month>
</PubDate>
</JournalIssue>
<Title>European journal of endocrinology</Title>
<ISOAbbreviation>Eur J Endocrinol</ISOAbbreviation>
</Journal>
<ArticleTitle>Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.</ArticleTitle>
<Pagination><MedlinePgn>545-564</MedlinePgn>
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<Abstract><AbstractText>The treatment and care of individuals who have a difference of sex development (DSD) have been revised over the past two decades and new guidelines have been published. In order to study the impact of treatments and new forms of management in these rare and heterogeneous conditions, standardised assessment procedures across centres are needed. Diagnostic work-up and detailed genital phenotyping are crucial at first assessment. DSDs may affect general health, have associated features or lead to comorbidities which may only be observed through lifelong follow-up. The impact of medical treatments and surgical (non-) interventions warrants special attention in the context of critical review of current and future care. It is equally important to explore gender development early and refer to specialised services if needed. DSDs and the medical, psychological, cultural and familial ways of dealing with it may affect self-perception, self-esteem, and psychosexual function. Therefore, psychosocial support has become one of the cornerstones in the multidisciplinary management of DSD, but its impact remains to be assessed. Careful clinical evaluation and pooled data reporting in a global DSD registry will allow linking genetic, metabolomic, phenotypic and psychological data. For this purpose, our group of clinical experts and patient and parent representatives designed a template for structured longitudinal follow-up. In this paper, we explain the rationale behind the selection of the dataset. This tool provides guidance to professionals caring for individuals with a DSD and their families. At the same time, it collects the data needed for answering unsolved questions of patients, clinicians, and researchers. Ultimately, outcomes for defined subgroups of rare DSD conditions should be studied through large collaborative endeavours using a common protocol.</AbstractText>
</Abstract>
<AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Flück</LastName>
<ForeName>Christa</ForeName>
<Initials>C</Initials>
<AffiliationInfo><Affiliation>Paediatric Endocrinology and Diabetology, Department of Paediatrics and Department of BioMedical Research, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Nordenström</LastName>
<ForeName>Anna</ForeName>
<Initials>A</Initials>
<AffiliationInfo><Affiliation>Paediatric Endocrinology Unit, Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Ahmed</LastName>
<ForeName>S Faisal</ForeName>
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<AffiliationInfo><Affiliation>Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Ali</LastName>
<ForeName>Salma R</ForeName>
<Initials>SR</Initials>
<AffiliationInfo><Affiliation>Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK.</Affiliation>
</AffiliationInfo>
</Author>
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<ForeName>Marta</ForeName>
<Initials>M</Initials>
<AffiliationInfo><Affiliation>Department of Obstetrics and Gynaecology, Ramazzini Hospital, AUSL Modena, Modena, Italy.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Hall</LastName>
<ForeName>Joanne</ForeName>
<Initials>J</Initials>
<AffiliationInfo><Affiliation>CAH Support Group, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Köhler</LastName>
<ForeName>Birgit</ForeName>
<Initials>B</Initials>
<AffiliationInfo><Affiliation>Department of Paediatric Endocrinology, Charité University Medicine, Humboldt University Berlin, Berlin, Germany (recently deceased).</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Pasterski</LastName>
<ForeName>Vickie</ForeName>
<Initials>V</Initials>
<AffiliationInfo><Affiliation>Department of Psychology, University of Cambridge, Cambridge, UK.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Robeva</LastName>
<ForeName>Ralitsa</ForeName>
<Initials>R</Initials>
<AffiliationInfo><Affiliation>Clinical Center of Endocrinology and Gerontology, Medical University-Sofia, Medical Faculty, Sofia, Bulgaria.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Schweizer</LastName>
<ForeName>Katinka</ForeName>
<Initials>K</Initials>
<AffiliationInfo><Affiliation>Institute for Sex Research and Forensic Psychiatry, University Clinic Hamburg Eppendorf, Hamburg, Germany.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Springer</LastName>
<ForeName>Alexander</ForeName>
<Initials>A</Initials>
<AffiliationInfo><Affiliation>Department of Paediatric Surgery, Medical University Vienna, Vienna, Austria.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Westerveld</LastName>
<ForeName>Puck</ForeName>
<Initials>P</Initials>
<AffiliationInfo><Affiliation>DSDNederland, The Netherlands.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Hiort</LastName>
<ForeName>Olaf</ForeName>
<Initials>O</Initials>
<AffiliationInfo><Affiliation>Division of Paediatric Endocrinology and Diabetes, Department of Paediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Cools</LastName>
<ForeName>Martine</ForeName>
<Initials>M</Initials>
<AffiliationInfo><Affiliation>Department of Paediatric Endocrinology, Ghent University Hospital, Department of Internal Medicine and Paediatrics, University of Ghent, Ghent, Belgium.</Affiliation>
</AffiliationInfo>
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<Language>eng</Language>
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<MedlineJournalInfo><Country>England</Country>
<MedlineTA>Eur J Endocrinol</MedlineTA>
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<ISSNLinking>0804-4643</ISSNLinking>
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<MeshHeadingList><MeshHeading><DescriptorName UI="D002648" MajorTopicYN="N">Child</DescriptorName>
</MeshHeading>
<MeshHeading><DescriptorName UI="D003625" MajorTopicYN="N">Data Collection</DescriptorName>
<QualifierName UI="Q000592" MajorTopicYN="Y">standards</QualifierName>
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<MeshHeading><DescriptorName UI="D012734" MajorTopicYN="N">Disorders of Sex Development</DescriptorName>
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<QualifierName UI="Q000235" MajorTopicYN="N">genetics</QualifierName>
<QualifierName UI="Q000601" MajorTopicYN="N">surgery</QualifierName>
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<MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName>
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<MeshHeading><DescriptorName UI="D012107" MajorTopicYN="N">Research Design</DescriptorName>
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<MeshHeading><DescriptorName UI="D046468" MajorTopicYN="N">Sexual Development</DescriptorName>
<QualifierName UI="Q000502" MajorTopicYN="Y">physiology</QualifierName>
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<Month>05</Month>
<Day>12</Day>
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<PubMedPubDate PubStatus="accepted"><Year>2019</Year>
<Month>07</Month>
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Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.

Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.

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